August 2010...anyone starting chemo besides me?!
Comments
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Lizzy: On Avastin: There is a journal, Oncology Stat, that had two articles about it this week. But they both were about Avastin and Ovarian Cancer trials. I can't remember if the articles talked about breast cancer or not, but you can check. I posted the links on the OvCa board, but didn't think about putting them here. Sorry! It's weird juggling two cancers and two support groups
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Good evening warriors-
Good news: my onc is so positive it is scar tissue they are not even scanning !!!!!!!!! Very excited!
Lady: that is what they were saying on CNBC how it is currently used for ovarian and prostate. They want to expand it to bc and are currently having hearings with the fda. The FDA is resistant because they feel the risks outweigh benefits, as I mentioned in my first post. Of course, the market on bc is humongous and no doubt that is what precipitates the drug makers interest in expanding it to bc. Who knows? If the FDA deems it ok then perhaps it is not all about capitalism!
Calamtykel: question: because you seem to know an awful lot about the estrogens and nutrition links, and I am hoping the connection to soy, I was wondering what your feeling is on a protein powder where Lecithin is the 3rd from the last ingredient? I purchased a GNC protein powder. They had zero powders without soy. Just wondering if you have an opinion either way.
Tex: yeah...she is kind of young for the all star thing! There is always next year. My nephew made all stars for baseball. He pitches and catches. He is pretty talented from what my (biased) brother says!
Ckptry: I think you are absolutely right in that Aidan could teach those kids something about making friends. The story still breaks my heart. I am glad they are coming to your house.
Sptmm: hope you are doing well over there on the island! I am very happy with our weather....I will never forget January 2011!! Hope you are having some good days, woman!
Well, time for me to get to bed! I hope you all have a good night and I will not post my scares anymore until I know for sure what is going on! It is just that sometimes the comforting words from you all are priceless.
Thanks to you all for making bc as positive an experience as it could be
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Lizzy - I am so glad it is scar tissue. I was monitoring from vacation land. Do post though, I expect these things will come up forall of us at times and it is comforting to get feedback. By the way, I am having a really nice time. today we went to beautiful snorkeling places and on the way back ran into a large pod of spinner dolphins. when I was doing chemo I focused on the boat trip that I did today to help get me through. It was a great day today.0
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You can wash your hair as you wish. Use a non stripping shampoo. A shampoo for colored or chemically treated hair. How did it come out? Are photos a possibility?
I go with my DD tomorrow to a facial surgeon who specialized in facial cancers. They know it is cancer and now need to get a clean margin. Pray it works out on the first try. They told her it could be a 6 hour visit if they don't get a clean margin on the first try. I don't care how long it is, only that she is well and the cancer is gone. She was told it is not the kind that ordinarilly gets into the lymph system and I am counting on that! She has al;ways used sunb lock but it is high enough up on her nose that it would have been near her eyes and also where her eyeglasses set.
Love you all GInger
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Lizzy - this is what my nutritionist has me drinking -it is a protein powder and yes, it has lecithin in it - but it also has a ton of other good stuff in it such as organic sprouts, probiotics, etc. All the ingredients are organic, so while it does have whey in it, it is from milk with out hormones, etc.
I guess it would depend on how much lecithin - this has 126mg, which I guess is probably a small amount. And if you are on tamoxifen, I imagine that would be added protection.
The whole estrogen thing is very confusing to me - I have a lavendar soap that I have been using on and off for a while and now I see that we're supposed to stay far away from lavendar and tea tree oil..........
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oops - this is the stuff I'm on with the ingredients: http://pureformulas.com/total-green-protein-powder-16-oz-powder-by-nutri-west.html
Whey 5,460 mg (18% Glycomacropeptide); All sprouts are certified organic, including: Wheat Grass sprouts 63 mg, Cauliflower sprouts 63 mg, Broccoli sprouts 63 mg, Asparagus sprouts 63 mg, Parsley 84 mg, Carrot 63 mg, Caprylic Acid 63 mg, Cloves 8.4 mg, Papaya 42 mg, Xylitol 42 mg, Lactobacillus Acidophilus (enteric coated) 37,000 units, Lactobacillus Bulgaricus (enteric coated) 37,000 units, Spirulina 126 mg, Chlorella (broken cell) 21 mg, Kelp 21 mg, Chia Seed 21 mg, Beta Sitosterol 42 mg, Apple Pectin 168 mg, Rosemary 42 mg, Protease (vegetable) 42 mg, Luo Han Guo 10 mg, Lecithin 126 mg, Rice Bran 840 mg, Rose Hips 252 mg, Calcium (as citrate) 16.8 mg, Magnesium (as citrate) 16.8 mg, Yellow Dock 63 mg, Milk Thistle 63 mg. Calories: 37; Fat: 0.072 g; Carbohydrate: 0.228 g; Protein: 5.86 g.
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Carolyn- Yes i finished rads in April i just had my 1 month post check up last week and it was good. Next i have my 3 mo post check up sometime in july then i am DONE with that medical center! Glad to hear he doesnt have to go back.
LIZZY I AM SO EXCITED TO HEAR THAT ITS SCAR TISSUE!!!!!!!!!!!!!!!!!!!!!!!! rE: RISKS OUTWEIGHT THE BENIFITS oops caps on, i think there comes a point that we as the consumers should have a say so in what care/treatment we are willing to undergo and allow us to weigh the risks/beifits ratio ourselves. Comming from a stage 4 perspective there are a lot of up and comming treatments out there that they deny to stage 4 women who are on their last leg and want to give it one last ditch effort. But the FDA says no. Either they need to test it further and the trials arent open to them or, the risks outweighs the "benefits" but when you're dying there is NO benefit to not geting something that may extend your life a while, or give you a better quality of life before you go.... Just saying
All stars- being a good pitcher or catcher almost always gets you a spot- now if you do both then youre a shoe in!
OMAZ- that must be awesome! To actually get to do what you were focusing on while going through all that crap! When i reach that point i will post
Good luck Ginger
i am praying for her.Calamity- its all greek to me LOL there is so much out there that says stay away from this and that but then other articals say that those things are good???? How much lavendar actually gets into your body when in soap form??? Any plans for the summer? Do you school through summer???? I just do worksheets to keep that knowledge in their heads LOL
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Oh i met someone for lunch yesterday off of BCO and she made an awesome lunch that i thought i'd share. toasted bagel with an avocado spread- it was sorta like the guacamole that restaurants serve except it only had onions and no tomatoes. it was simple and Delicious!
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Lizzy yay so glad to hear that the lump is just scar tissue! And definitely you can still post about scares before you hear from the doctor, we are all here to help and reassure each other.
Omaz I am so glad to hear you are having such a great vacation. What a great post treatment reward. It is wonderful to be past the crap and out enjoying our lives again! I have been thinking about that a lot this week since DH and I are in Baltimore visiting his family. We come up every summer but last summer had to cancel our trip due to my diagnosis and surgery. So it is nice to be here this year and see everyone.
Ginger I am sending out good thoughts for you and your DD today. Hopefully they can easily get clean margins. Will she need any other treatment besides the surgery?
Someone is going to see my house tomorrow and then my realtor will be doing an open house on Sunday so I'm hoping we will finally get an offer soon!0 -
Hooray Lizzy, great news!!!
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Lizzy--Great news...sigh of relief.
Unfortunately, it looks like I am heading back into the "waiting room" for worry. I have been having some aches in my left breast for a few weeks. It started after radiation (my radiation/cancer was on the right breast) and I started an exercise class using those strengthening bands. I thought that it was a muscle pull and the fact that I am perhaps overcompensating for the weaker side. However, the aches haven't gone away and now extend further down my left side. The reason that I am worried and getting it checked is that I had some pain in my left side back at the beginning of the year before starting rads and my onco ran another bone scan to rule out mets. The bone scan came back clear and therefore, they were not sure what is causing the pain on that side. It is not going away. I am due to see my onco in July and was going to wait but my mind won't rest--so I will see my GP next week and see what she suggests. It is so confusing as to who I should contact--onco or GP. I am guessing my GP will ask for scan/ultrasound etc. It has just pushed me back into the worry stage again--I thought that I would be able to handle this easier--but I am worried. Everyone keeps saying it is probably nothing, maybe Tamox, maybe whatever--all I think is maybe it is cancer again. Aaargghh. Just when I thought things were getting easier. My appt is on Tues so hopefully I will know from there what the next steps are.
Question: For any that have had a concern since finishing treatment--have you just gone to your GP or back to your onco or maybe the surgeon? That is where I am confused.
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Texas - No, we're done with school for the summer!
Except for my 14 yr old who is doing a final paper I assigned to her, and my 7 year old who has to finish his reading book which should be done by tomorrow. I DESPERATELY need the break this year and am looking forward to doing field trips with the kids (trying to plan a NYC trip for next week, etc) That's educational too! As for stuff getting absorbed, I believe the lavendar/tea tree is based on a study they did with little boys- they had them using these soaps and stuff that had lavendar/tea tree oil in them and they actually grew breasts - when these products were removed, they went back to normal. Weird and scary stuff. But you're right - you can drive yourself totally nuts with what's okay and what's not!
I just scheduled my mammo - and an app't with the gyn for a routine. I've had my period for 11 days now!
It started as really light -just barely spotting for the first three days. then it started and now it just won't end - dragging on with spotting - I'm scared something is wrong.........................I'm scared because this is the same time last year I got diagnosed and was having mammos- just scheduling it brought it all back. ARGH! DIdn't expect to feel this way...............
k
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aww kel, the things that bring back bad memories!
The trip sounds fun
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Lizzy so glad all is okay
rachel I would contact your onc's office anyway. You don't wan to go to the gp and have them to tell you to see the onc. As for who to follow up with, I think it depends. For the flu or injuries you could see your gp, but if you're questioning it contact your onc. They should understand and be able to triage for you.
ginger I hope your daughter's surgery goes smoothly and they get clean margins.
lady hope you are feeling well!
wow - they're closing the schools here early b/c it's going to be 97 tomorrow. I don't ever remember that happening when I was growing up. I'm babysitting and my daughter has a playdate, so I'll have 4 kids 6 and under. wish me luck:-) My son has a muscle biopsy on Friday at Columbia. I know he's in good hands but I hate that he'll be put under. At least being busy tomorrow will keep my mind off of things.I just realized tomorrow is 1 year since my bmx. What a crazy year. I feel like it flew by and dragged on all at the same time.
take care
Carolyn
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Lizzy: GREAT NEWS!! Don't worry about posting your scares here. We really are the only group of people that understand exactly how you feel. That's what we are here for, to talk each other down off the ledge!!
Rachel: I think I would call the onco as they are a little more familiar with the symptoms of cancer, less likely to order unnecessary tests. Good luck...I hope it is just a pulled muscle!
Ginger: Hope everything went well today for your DD!
Carolyn: Good luck with your son's biopsy. Isn't it funny how we could be so brave all year and face major surgery, chemo, etc. but any procedure involving our kids can send us into a tizzy! I guess that is the curse of motherhood, you get to worry for everyone!!
Debbi
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I contacted my oncologist and waiting to hear back. Friend of mine told me to call my surgeon--so I did--they said because I haven't been seen there for more than 6 months--they would need another referral. I have an appt with GP next week and will wait to hear back from onco. Originally, I was convinced it was a pulled muscle as I can feel it throughout breast/chest muscle and into armpit. Just isn't getting better. I know that this worry is never gone. Just sucks. Pre-cancer--I wouldn't think twice about a sore breast/armpit--but post-cancer---different story. Thanks for letting me vent here---Everyone here understands--feels like the best place. I think that my friends/family think I am crazy--all just say---"its nothing". Thanks again guys---just knowing people are reading and listening...helps calm me.
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p.s Carolyn....Good luck with your son on Friday...will be sending hugs your way
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Here is a tractor my friend had painted pink and she is riding in a 2 day tractor ride this Fri. and Sat. and she is riding it in some parades. This is so awesome. Breast Cancer awareness.
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That tractor is awesome...what a great idea!!
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My DD did just fine today. The surgeon had to remove more skin three times to get clear margins. The area is 1.9 cm long and half as wide. It runs alongside her nose from up near her eye. They did stitches inside and then on the outerlayer of skin. She has a black eye and a big pressure bandage. The surgeon told her to thank her mom, me, for telling her to get looked at.
I watched our DGD who is 9 months old out in te waiting room for 4 1/2 hours it all took. DGD was very good and was of course most excited when Katy came out to nurse her.
The area of the funny looking skin was very small, the area of the cancer was much much larger. We should all be aware that this can lurk and grow under the skin.
Thanks for your prayers.
Hugs GInger
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Good evening warriors!
I hope everyone is having good days. It is nice and hot (JSW!) in Ct these days and I am loving it!
Omaz: thanks for monitoring from vacation land! I am glad you finally got to go on your boat-ride-of-inspiration! Good stuff. Glad you are enjoying yourselves. Dolphins are great, aren't they?! Just love them.
Ginger: sure, I will get some pics posted on flickr. It came out pretty good. My sister reminded me it is fairly close to my "original" color. She also said I did not burn it and that was good!
I am awfully sorry to hear about your daughter. I am glad things went well today. I know about that skin cancer business of a small spot potentially representing cancer 10xs that size. For this reason I had all of my "beauty marks(!)" checked out after bc. In any case, I am really glad you encouraged her to go. I guess our hyper vigilance will help our families.
Calamtykel: thanks for letting me know about the powder you use. I am not too happy that I spent $50 on a GNC jug, made 2 smoothies and am now being told toss it! Is whey actually soy? This powder that I got is a whey protein powder. I thought whey was ok for us?! You are right, it is all wicked confusing.
That is a great powder you are on. I am going to check out their product line tomorrow.
As for the cycle, 11 days and spotting, it is a lot to be dealing with. Spotting without a cycle is a caveat but as long as you have been in cycle, hopefully it is about to end for you. I hope you are fine. Don't worry.
Texas: I think a person should be able to decide for themselves if they wish to participate in a trial. I think I am going to study the FDA. I want to know about their machinations and what makes that joint tick...besides money! I don't think Stage IV means what it used to. I don't think bc means what it, just a short while ago, did. I think there is a lot of hope for all of us.
That is so cool that you met someone from this site for lunch! That is so nice. We really are the Ta-Ta Sisterhood or, in my case, the non as it were!
JSW: 2 vacas in a few months! Good for you! I can't wait until this mess is over and I can get back to traveling. I am glad you are enjoying seeing your dh's family. You should go to an O's game while you are there!
Best of luck with the showing and I sure hope you get some snaps soon.
Lady: Hooray is right! Thank you. How are you doing these days?
Iowa: great tractor!
Rachel: boy do I ever sympathize with your worrying. The only thing I want to remind you is cancer does not generally "hurt." I remember a family member referring to cancer as the "silent killer" many years ago because it does not hurt and generally does not show signs. This pain in your side could be a number of things although I fully respect why you are worried. I agree that it is hard to figure who to call when things come up....which doc? I am very close to my GP so that is generally where I start. I wish you well. Will be thinking of you and sending some good vibes your way.
Back to the "which doc" issue. I was feeling the same way a few days ago. The onc, regarding my lump, asked if I saw the bs. I don't really know where to turn so for me it is always my GP. The thought of going to see a surgeon about a lump frightens me quite frankly.
Ckptry: Isn't that something that schools are getting closed because of the heat?! Never remember that when I was young either. Four kids six and under is a big distraction! I am sorry poor Aidan has to go for a muscle biopsy. I hope all goes well for him.
My 1 year bmx anniversary is coming up on the 22nd. I agree with the fly-by/drag-on ...I think chemo sponsored the drag part.
LE sleeve: I sw my onc about it and he said they like us to wear them when flying as a preemptive measure. I am not going to get one until September, when I plan to fly again.
Well, good night all and keep smiling!
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Lizzy - No, whey isn't soy! Don't toss it - Whey is milk! It's part of the milk protein. I like the Nutriwest powder since at least everything is organic (so they whey is from 'non hormonal' cows ;D
Ay yi! 100 degrees today! It is crazy - some schools around here are closing but not all since they have AC> I remember as a kid going to school when it was real hot and the "girls" weren't allowed to wear shorts - they sent a notice home with us. Only the boys!! Yes, this was 1978 or 79! The rationale was that said since girls "could" wear skirts they were not to wear shorts in the heat, only the boys. Well, no little girl in 1978 was going to wear a dress to school; in fact, most girls didn't even have a dress! So we all sweated in our polyesther pants while the boys got their air cooled legs! I remember being in fourth grade and being totally infuriated at the double standard. I'm still amazed that they got away with that kind of rule!
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Omaz: Your vacation sounds amazing. Glad you are having such a great time! I LOVE DOLPHINS!!
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LOL@ kel that is the silliest rule ever!!! Yeah they closed the school here because it had gotten too cold LOL it was maybe 33 or 34 degrees i think, i used to walk to school in the freakin snow! Not miles or anything just a few blocks( that was in WA) but still here in tex they closed it just because of the temps!!!
We're already out for summer vacation so it doesnt matter how hot it gets now
Iowa hopefully she has a custom seat on that if she plans a 2 day ride, i ride on has an AWFUL seat! I think thats just great she did that, i dont think anyone has seen a pink tractor before!
i think you lost your mind carolyn! 4 of 'em! my 2 are driving me batty already LOL- the whole "i'm bored" thing is driving me nuts!!!
Lizzy- yeah stage 4 aint what it used to be, but i am specifically referring to those who have exhausted all of their treatment options and are bascially on their deathbeds... why cant they take something that may or may not help them- should be their choice
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Awesome tractor!
Rachel: I sent you a PM. Glad you've called your onc. I really don't care anymore. I call them about everything. I figure F it ... this is my life we are talking about here, I don't care if I'm being overly cautious.
I'm doing good, thanks to all who asked. Go for chemo #3 for my OC next week. So far, so good with it.
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guys -I went to parochial school and we had to wear skirts and white cotton blouses. The boys could wear pants in the winter, but we girls all froze in our stockings or knee socks (I don't even think they allowed stockings at first). I'd forgotten that!
Timothea - having 4 today made me really grateful that I only have 2!
ginger - glad they were able to get clean margins on your daughter and that it wasd caught early.You'll have to post some more pictures of that happy little gd.
please send good wishes for Aidan's procedure tomorrow. I don't like that he has to be intubated, but it's supposed to relatively quick so hoping they get him back to me quickly. I'm a little hurt ; we just got the date this week and don't have a daytime sitter. They just told me no siblings allowed so I asked my mom to watch Caitlin for us and she said she's having lunch with my dad's brother and SIL (whom they can't stand). She always does this, says no then calls half a dozen times, then agrees when she's established how much she's incoveniencing herself. She did it to me so many times during chemo and I think my new post cancer present to myself is not to deal with her head games. She just called and I didn't answer the phone. Still stings a little, I think part of me always expects that she'll suddenly become maternal, but I guess if my cancer didn't do it nothing will. Just a little OT vent:-)
Carolyn
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Hi Everyone! Been really busy but have been trying to pop in now and again and see how everyone is doing.
Ginger: Glad to hear your daughter's procedure went well. Good thing you had her get it checked out. Skin cancer is a sneaky thing. I second the need for new pics of that adorable GD, would love to see some.
Carolyn: I too went to parochial school. Did you guys get to wear all the funky knee socks..remember those hairy gorilla socks?. In my school the skirt, blouse, and shoes were standard but you would wear any knee socks you wanted...so we expressed ourselves with some pretty wacky ones..LOL. I will say an extra prayer for Aidan. Hope everything goes smoothly!! As for mom, people can really get under your skin sometimes. Even when you know what to expect from them because they do it all the time...it never fails to aggravate you!! I say you keep ignoring the phone and try to forget about it. Good luck tomorrow!!
Texas: I am with you on the treatments. I understand the scientific aspect of the trials, but it just seems wrong to deny someone a treatment, even experimental, that might help them for any reason.
Lizzy: How are you doing? Did you see that article on the home page about the different ways to cook kale...I thought of you the minute it popped up on the screen! How is that Survivorship clinic going?
Rachel: Did you hear back from your onco? You had a lumpectomy, right? Cause I did too, and the seroma that I developed causes pain, maybe you have developed one too?
Have a great day everyone!!
Debbi
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I heard back from my oncologist--he "isn't concerned". He said that he will see me in a couple of weeks anyway. I am still concerned...I am seeing my GP on Tuesday (Onco said to keep that appointment). She can check me out and order any scans required.
Debbi--The ache/soreness is in the other breast--not the same one that had the lumpectomy. It is achey/sore-almost like when you are pregnant or breastfeeding. It is a strange feeling especially since I had hyst last year and on Tamox for the last 6 months.
I am a worrier by nature and having two cancer diagnosis in a matter of months in 2010--makes me a little hyper-vigilant (that's putting it nicely for myself!!). The worry sucks and the more I read the more I think that there is something really wrong---I know that you can place your symptoms into almost any diagnosis--have to try to stop my mind racing down that track until I see Docs. Obviously that meditation/relaxation classes didn't work
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Lady- How often is your chemo? Weekly? every 3 weeks???
Carolyn- lol i feel like that every time my nephews come for a visit LOL (glad i only have 2)! But you know when htey are here we manage through the chaos VENT AWAY! my mom is like that too and i think the same thought- if my cancer doesnt change her nothing would! SO did you find a sitter?
I think i read somewhere (prob here) that worriers tend to do better medically because they catch everything before it progresses... Or maybe i just thought i read that LOL cant for the life of me pull out that info from my head
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Rachel: Give yourself a break..given everything you have been through, your worry is completely understandable and justified! Don't feel bad for wanting to set your mind at ease. Even if it turns out to be nothing, you deserve peace of mind. And I am sending my prayers your way that it turns out to be nothing!
Carolyn: How did Aidan do today?0
